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The MPIP Off-Topic Forum is a community bulletin board that provides the melanoma community with a safe space to share experiences and to give and find support from others who can relate to having or caring for someone with a melanoma diagnosis. Please note: if you have an urgent question about melanoma to ask the community, visit the main MPIP Forum.

MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Hi all. I completed Yervoy last spring and have been on Zelboraf for 7 months. I was just refused entry into a PD-1 trial at Sloane due to brain mets which Bristol Myers Squibb claims are active. My docs and radiation consultants disagree but I guess the drug companies get to make that decision. other mets in my stomach and knee seem to be showing some indication that my body may be building up a resistance to the Zel.

Anyway, my onc now wants to continue with the zelboraf, re-introduce yervoy along with it and also add some radiation. Anyone have any experience with this? I've tried to do some research but couldn't come up with much. Any help would be greatly appreciated.

Allen Carr called to let me know some of the oldtimers were doing chat this week (and last week). I can't get in---I just get a black screen. Any help?

You're all prolly gone tonite since it's after 10pm EST. Wish we could still see who was in the chat room. *sigh*

Anyhoo, howdy, hope you all haven't missed me too much. I know some of you haven't missed me at all! =)

Still raising girlies and taking care of MamaG. She fell the 1st week in January and broke her clavicle (collarbone) on the right side. She did a hard, fast rehab (10 days or so). Got her home from that, and 2 days later, she was back in the hospital w/ pneumonia. She went to a skilled nursing rehab after that, and within FOUR HOURS of being there, fell off the flippin' bed and broke her left hip! She had surgery 2 weeks ago, and is back in skilled nursing rehab. She's had a rough start this year.

I'm over 12 years NED now (yippeee). Still have a crappy back, which is getting crappier every day. I live with it.

If I can ever get into chat, I hope to reconnect with my old-timer buddies! We need another bash! Told Allen we need to take a cruise, but I've been rethinking that after the "cruise from hell" recently.

Ya'll can find me on facebook (Lisa Garman Norvell).

Take care! *Hugz*

~L~

ps.. JAG---didn't know you had a baby boy now. Congrats! Mr. Bill---send Allen Carr your email addy, k? He asked me if I had it.... hah! (Never did!)Bonnie, I think of you all the time. I owe tons of people emails and can't say when (or even IF) I'll get around to answering them. Life is busy busy busy these days, and when it's not, I'm playing auto-bingo while trying to catch up on shows on my DVR!

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

My brother was diagnosed with Stage IV melanoma last June and passed away from the disease 3 weeks ago. Even though we live in different states, during his illness I broke my neck and did everything I possibly could to get him the best possible care and to ensure that his quality of life was as good as it could be all the way up to the very end. It was, of course, a very stressful time for everyone in the family. I knew that I was stressed and grieving (and I did take care of myself as best I could) but it wasn't until after he had passed and I had done all the necessary paperwork that my stress and grief REALLY hit me. I guess I'm one of those people who is able to push my emotions into a corner of my mind and get on with what needs to get done. I suppose that is a characteristic of all of us caregivers.

From time to time over the last 9 months I have seen a very good grief counselor. She is very experienced in hospice work and she seems to "get" me and how I operate mentally and emotionally. I saw her the other day for the first time since my brother died. I told her that I was doing OK. Yes, I get overwhelmed with sadness sometimes and start to cry some. But it passes quickly and I get back to doing a lot of things that I have let slide over the months (house cleaning, grocery shopping, freelance work, etc.).

By the end of the session she said that she did not think that I was "doing OK". She said that 3 times during our session I had gotten all choked up and fought back tears. People who are "doing OK" don't behave that way. I replied that I thought that type of behavior was to be expected when one was grieving. I figured that it would take time for the intensity of the feelings to subside. One just had to be patient and get through it. She said, "No". She said that the only way to really get through grief was to talk about it and cry about it for as often and as long as necessary. Rehash the same upsetting memory again and again if necessary until the grief is gone. It doesn't have to be with her; I could relive the memories and express my grief with my spouse or my family or with my close friends. But her advice was to do so in order to experience emotional healing.

That approach is foreign to me. In my family, we keep our mouths shut about distressing emotions. If you start feeling badly, distract yourself, change the topic of conversation, push the emotions away. Letting it out, rehashing and reliving the stressful past and anticipating the unhappy future, or crying openly in front of other people is shameful and just makes you feel worse. No good can come of it.

So now I don't know if I should trust this therapist and continue seeing her for periodic "crying sessions" or whether I should do what I have been taught to do by my upbringing and experience-- stiff upper lip the whole thing. Since this is my first experience with losing someone close to me, I can't imagine how to do things differently from the way that comes naturally to me. I can't imagine how emoting all over the place will help me. But maybe I'm just suffering from a lack of imagination here. Maybe I should try it the therapist's way.

This is where I could use your input. In your experience with grieving (either now or in the past), have you allowed yourself to frequently talk about and cry about your loved one and how sad you are that they had to endure the misery of their disease and how much you now miss them now? Do you think that's a healthier approach than just pushing your grief into a corner and getting on with life? Is the emotional end result-- say 6 months or a year later-- any different with the two approaches?

I check the board multiple times a day to hear - anything. Please let me know how my friend is doing now. Last I read she was asking for her banjo. I pray for her every night, and I don't pray much. Please let her continue to heal...... I also hope the IL-2 she did tolerate is kicking mel's butt royally.......

KK

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

Oh for the days of the darkside. But...here we are....this is a time for regeneration and new growth...spring has sprung (at least here) sort of.... but My old fashioned prayers are spilling forth and you simply must pay heed. Taint your time no way no how. Who will light Cigar Bob's cigars? who will be the guitar member of the DFS and who will learn the banjo, except for you?

I posted before about our "last visit" 3 weeks ago (see:http://www.melanoma.org/community/off-topic-forum/update-re-last-visit ). Even though he couldn't talk at that time other than to say "yes" or "no", we had a very good visit, we had some fun, and we communicated what needed to be communicated. A week or 10 days ago, he could no longer say even "yes" and"no", he could not get out of bed without assistance, and he started to have trouble swallowing. He still claimed to have no pain (he could nod his head "yes" or "no") but his medical team decided it was time for hospice inpatient care. He was moved from the nursing home to the hospice house last Wednesday.

On Friday morning, I got a call from the hospice nurse that "it was time"-- hospice felt that my brother was near the end. So I threw my clothes in a suticase, jumped in the car, and drove 8 hours from Atlanta to Tampa. I arrived at hospice house at about 9 PM. My brother was semi-comatose, but resting peacefully, not in pain or struggling to breathe. No tubes, no beeping monitors, no glaring lights. Just apparently sleeping. I sat with him for quite a while. I talked to him and reminded him about some crazy St. Patrick's Day stunts he had pulled in the past. I put a cool washcloth on his brow, and cried a little. He woke up a couple of times and seemed to recognize me. At one point, he raised one hand and moved it toward me, which I interpreted as him wanting to give me a hug. So I sat on the edge of the bed an we had a long hug. When it was time for me to leave, I told him to go back to sleep and that I would be back in the morning. At 8 the next morning, hospice called to tell us Mike had just passed.

It seems strange to say it, and I could never prove it, but I can't help but think that he was waiting for me to get there before he let go. I have been the closest person to him throughout his life (other than his dear, departed Margaret) and I can well imagine him using his incredible will to hang in there long enough for me to see for myself that he was not in distress and for us to both have a loving good-bye.

His gentle, fiercely independent life, his long valiant struggle, and his final passsing are over. I was able to arrange for his favorite priest to say Mass for my brother that same day, and our 91-year-old mother and I were able to attend. This evening, I am hosting an Irish wake (on Saint Patrick's Day, no less!) at his favorite local bar. It's a "Friends" type place where everybody knows Mike's name. I promised to buy a drink for anyone who can tell a funny story about Mike-- gross exaggerations will be encouraged. My brother was very cooperative in the last few months about settling his affairs, so there really won't be much left for me to do as his executor-- just some forms to fill out and a final interment/memorial service in June.

Farewell, dear big brother. From now on, I will imagine that you and Margeret are happily and forever sailing away to fascinating new harbors in Heaven.

I just posted on the main board (which is so rare for me~) Dian called!! It was so exciting to hear her voice. Did you guys know she has an ACCENT? Who knew???? Anyway, she did 13 out of 14 bags, is having some side effects, handling them phenomenally.
She can't post herself because she is having some computer problems there..but she sounds soooo good! It was wonderful to hear from her as I have been thinking of her constantly. So sad there is a whole country in between us.

I'm a believer in the least amount of sugar in my diet. I do supplement at times with Stevia. Since Stevia is a natural sugar like regular sugar, should I cut it out of my diet too? I otherwise have a very healthy diet. I eat gluten free, mostly whole foods. Very little processed food. I eat fruits, vegetables, nuts, seeds, eggs, limited beef, chicken, fish and rice and rice noodles. I also use supplements to make sure I'm getting all my vitamins and minerals.

I am a stage 3 melanoma survivor doing several small fundraisers for MRF throughout the year. I'm looking for women whose lives have been touched by melanoma (either directly or indirectly) who could help me with my fundraisers. The time committment is very minimal and it does not matter where you live. Please send me an email for more into at welgetracy@gmail.com and put MRF Fundraising in the subject line.

I first had a 0.9mm melanoma remove from my skin in 2008 31/12/2012 I was diagnosed with a 3 mm local recurrent in the scar line this has been removed and I have been lucky enough to be told negative node after SLNB.

I have now bee told to take interferon for 4 weeks high dose and then 12 months delf administered... I have a 8 month old baby to look after a 13 year old daughter and am scared I will not cope whilsy on the course I also live in ireland away from all my family I am put off my the bad side effects but also dont want to regret not taking this chance to see off the monster your thoughts advice anythink welcomed as this is the hardest of decisions..